Re: NEWLY DIAGNOSED CML.STARTS GLEEVEC. SIDE EFFECTS?

December 12, 2007

Hey there-

It has gotten easier for me as time goes on.

Initially the side effects were rough- bone pain,

muscle cramps, stomach upset etc. I don't have them,

anymore.I was diagnosed last February. I am lucky- I

work, I'm walking in half marathon,I feel great, I

have a social life with friends. But... I look

different, facial edema, weight gain from water

weight( I call it being fluffy), sleep disturbances ,

thining eyebrows, anemia, low white blood cell count

and more but...I am alive and probably have many more

good years to loof forward to- so in comparison all

that other stuff is trivial. Each person is so

different and the results are very individual- some

people can hardly get out of bed while others are

playing hockey.

While I think we are able to live " normal lives " at

least for me- I haven't been able to return back to my

old life- so I'm just starting a new one!!!

Welcome my friend- you are not alone.

--- thorello1 <thorello1@...> wrote:

> I have been newly diagnosed with CML. Seems like a

> nightmare. Will

> start on this gleevec stuff this week. What can I

> expect from taking

> this? What has been others experience with this

> drug? The doctor

> remarked those that can tolerate this drug, can

> return to normal lives.

> is this true?

>

________________________________________________________________________________\

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December 12, 2007

Welcome to the club that nobody wants to be a member of.

You can expect some side effects in the first month or two and then it

diminishes. Some don’t get any side effects at all.

The majority of CML patients return to living normal lives.

I would urge you to keep in touch here and ask questions. We have all been

there and can offer you help.

After a while you will get to understand what my signature is about.

Zavie

Zavie (age 69)

67 Shoreham Avenue

Ottawa, Canada, K2G 3X3

dxd AUG/99

INF OCT/99 to FEB/00, CHF

No meds FEB/00 to JAN/01

Gleevec since MAR/27/01 (400 mg)

CCR SEP/01. #102 in Zero Club

2.8 log reduction Sep/05

3.0 log reduction Jan/06

2.9 log reduction Feb/07

3.2 log reduction Jun/07

3.6 log reduction Sep/07

e-mail: zmiller@...

Tel: 613-726-1117

Fax: 309-296-0807

Cell: 613-202-0204

ID: zaviem

_____

From: [mailto: ] On Behalf Of

thorello1

Sent: December 11, 2007 5:00 PM

Subject: [ ] NEWLY DIAGNOSED CML.STARTS GLEEVEC. SIDE EFFECTS?

I have been newly diagnosed with CML. Seems like a nightmare. Will

start on this gleevec stuff this week. What can I expect from taking

this? What has been others experience with this drug? The doctor

remarked those that can tolerate this drug, can return to normal lives.

is this true?

December 12, 2007

Hi,

I was able to resume diving 2 months after dx, after regaining some

weight (I was dx in march 2005 with 250 wbc, 50lbs below my normal

180lbs for 6'2). I dove a wreck 310' deep 3 1/2 months after :

http://tinyurl.com/3yso3n

I also resumed climbing and so far so good. People cope more or less

well with gleevec but there's a good chance you ll be able to resume

whatever sports you were doing. I am 41. I do have some side effects

but it's not bad. Obviously when I don't feel so good I don't dive or

climb.

Marcos.

On Dec 11, 2007 6:42 PM, china neal <chimera46@...> wrote:

>

> Hey there-

>

> It has gotten easier for me as time goes on.

> Initially the side effects were rough- bone pain,

> muscle cramps, stomach upset etc. I don't have them,

> anymore.I was diagnosed last February. I am lucky- I

> work, I'm walking in half marathon,I feel great, I

> have a social life with friends. But... I look

> different, facial edema, weight gain from water

> weight( I call it being fluffy), sleep disturbances ,

> thining eyebrows, anemia, low white blood cell count

> and more but...I am alive and probably have many more

> good years to loof forward to- so in comparison all

> that other stuff is trivial. Each person is so

> different and the results are very individual- some

> people can hardly get out of bed while others are

> playing hockey.

>

> While I think we are able to live " normal lives " at

> least for me- I haven't been able to return back to my

> old life- so I'm just starting a new one!!!

>

> Welcome my friend- you are not alone.

>

> --- thorello1 <thorello1@...> wrote:

>

> > I have been newly diagnosed with CML. Seems like a

> > nightmare. Will

> > start on this gleevec stuff this week. What can I

> > expect from taking

> > this? What has been others experience with this

> > drug? The doctor

> > remarked those that can tolerate this drug, can

> > return to normal lives.

> > is this true?

> >

>

> __________________________________________________________

> Looking for last minute shopping deals?

> Find them fast with Search.

> http://tools.search./newsearch/category.php?category=shopping

>

--

Marcos Perreau Guimaraes

Suppes Brain Lab

Ventura Hall - CSLI

Stanford University

220 Panama street

Stanford CA 94305-4101

650 614 2305

650 630 5015 (cell)

marcospg@...

montereyunderwater@...

www.stanford.edu/~marcospg/

December 12, 2007

Hi again,

Blake is a professional hockey player for the Toronto Maple Leafs and

he has CML. Just an example of someone who can still compete at a high level

with CML.

Everyone is different. Play it by ear. Also, forget the adage ‘no pain no

gain’ for a while.

Zavie

Zavie (age 69)

67 Shoreham Avenue

Ottawa, Canada, K2G 3X3

dxd AUG/99

INF OCT/99 to FEB/00, CHF

No meds FEB/00 to JAN/01

Gleevec since MAR/27/01 (400 mg)

CCR SEP/01. #102 in Zero Club

2.8 log reduction Sep/05

3.0 log reduction Jan/06

2.9 log reduction Feb/07

3.2 log reduction Jun/07

3.6 log reduction Sep/07

e-mail: zmiller@...

Tel: 613-726-1117

Fax: 309-296-0807

Cell: 613-202-0204

ID: zaviem

_____

From: [mailto: ] On Behalf Of

thorello1

Sent: December 11, 2007 5:11 PM

Subject: [ ] NEWLY DIAGNOSED CML.STARTS GLEEVEC. SIDE EFFECTS?

I will start on 400mg of Gleevec end of this week. what can I expect

from the first weeks/months of taking it? Side effects? I am very

athletically oriented, having a strenuous work out program. How will

this affect my stamina, physical output?, Work out Recuperation?

December 12, 2007

Hey,

Good Morning

Gleevec is very good medicine. You take this medicine with full faith. I was

on Gleevec for appox 3 years. During this period I have not noticed any side

effect because of my diet & my thougts. You can follow the followings with

consent of your doc.

Take 1 apple daily morning with your breakfast ( Preferably empty stomach)

Take medicine with full of stomach ( Either after lunch or dinner) and with 2

glass of water.

Take minimum 3 to 4 liter water a day

Take Papaya fruits daily after dinner ( After 45 mnts.)

Best wishes & Good Luck

J P Tiwari

thorello1 <thorello1@...> wrote:

I have been newly diagnosed with CML. Seems like a nightmare. Will

start on this gleevec stuff this week. What can I expect from taking

this? What has been others experience with this drug? The doctor

remarked those that can tolerate this drug, can return to normal lives.

is this true?

December 12, 2007

Welcome to this online group. Sorry that you are a part of the 'club'. I must

say, however, that with the advise and information from this cml site, I have

been able to cope quite well with the Gleevec since my diagnosis four years ago.

I am a working mother and have not stepped back at all in my hours. I do rest

when I can and need to, but I find that much of the coping has to do with

attitude as well as everything else. I am one of the one with many side

effects, and yet I must say that I still have a pseudo-normal life. It's just a

kind of new normal and my family and friends and I have come to adjust rather

well.

Be good to yourself in the first few months especially as you adjust. Don't get

too overwhelmed if you have side-effects -- I find that the symptoms stay awhile

and then change to something else. Sort of a cycle of side-effects. None of

them are life-changing or paralyzing, though. I just adjust a bit when it is

happening. It's all matter of individual response and attitude and support

from others.

Hang in there and try not to expect the worst. I am sure you will be surprised

in time with how well you are doing. Give it time though and ask all the

questions you need to. We all benefit from each other.

Just a note about Gleevec: Gleevec is a miraculous drug and very effective.

The good news is also that there are a couple of new drugs following Gleevec,

now, so that is very encouraging for all of us.

greetings,